CoChat
Sign Up
Cited by 42Nursing care and researchPatient-Provider Communication in HealthcarePalliative Care and End-of-Life Issues

Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey

Open access
Dionne‐Odom, James N., Kent, Erin E., Rocque, Gabrielle B., Azuero, Andres, Harrell, Erin R., Gazaway, Shena, Reed, Rhiannon D., Bratches, Reed W. +5 more·2023·Health Expectations
DOI 10.1111/hex.13805PMC PMC10485321
Open this paper in CoChat — free accountOpen PDF

Abstract

Abstract Background We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision‐making. Methods Family caregiver‐reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021–7/2021). Four select‐all‐that‐apply caregiver roles were explored: (1) observer (patient as primary decision‐maker); (2) primary decision‐maker; (3) shared decision‐maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ 2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. Results Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision‐making role, 53.9% a shared decision‐making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge ( b = −0.581, Wald = 10.69, p < .01). Conclusions Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. Patient or Public Contribution The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision‐making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.1111/hex.13805

Cites

25 of 25 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Although over 100 clinical trials showed positive outcomes for cancer caregivers, fewer than 12% of U.S. cancer centers had integrated these programs into routine care.

    “Odom et al. [5,6] reported that although over 100 clinical trials showed positive outcomes for cancer caregivers, fewer than 12% of U.S. cancer centers had integrated these programs into routine care.”

    From Home care comparison (2026) · cites this paper as [6]

    The Introduction and Results describe a national survey of caregivers’ roles and challenges in cancer treatment decisions. Searches for the claimed 100-plus positive clinical trials and the figure that fewer than 12% of U.S. cancer centers integrated caregiver programs found no passage addressing either figure in our copy. (LLM, conf=0.75)

    Experimental — accuracy not yet measured

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cites

Flagged first, then by citations

Research works printed but not linked: 1

  1. [25]Arnold R, Back A, Baile W, Edwards K, Tulsky J. The Oncotalk/Vitaltalk model. In: Kissane D, Bultz B, Butow P, Bylund C, Noble S, Wilkinson S, eds. Oxford Textbook of Communication in Oncology and Palliative Care. 2nd ed. Oxford University Press; 2017: 363‐ 368.

Cited by

Sorted by citations

Related

Authors
Dionne‐Odom, J. N., Kent, E. E., Rocque, G. B., Azuero, A., Harrell, E. R., Gazaway, S., Reed, R. D., Bratches, R. W., Bechthold, A. C., Lee, K., Puga, F., Miller‐Sonet, E., & Ornstein, K. A.
Affiliations
  • Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA
  • University of North Carolina at Chapel Hill (US)
  • University of Alabama at Birmingham (US)
  • University of Alabama (US)
  • CancerCare (US)
  • Johns Hopkins University (US)
ORCID
Venue
Health Expectations
Publisher
Wiley
Published
2023-07-02
Volume
26
Issue
5
Pages
1965-1976
ISSN
  • 1369-6513 (ISSN-L)
  • 1369-7625
DOI
10.1111/hex.13805
PMC
PMC10485321
OpenAlex
W4382919010
Cited by
42
References
25
Citations by year
2026: 18 · 2025: 11 · 2024: 10 · 2023: 3
FWCI
17.24
Type
journal article
Language
en
Open access
Licence
Locations
  • Health Expectations (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
  • Amgen
  • Pfizer
  • Regeneron Pharmaceuticals
  • Australian Government
  • Eisai
  • Astellas Pharma
  • National Institutes of Health
Topics
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Keywords
family caregivers, cancer treatment decision-making, shared decision-making, caregiver role, caregiver challenges, second opinion, quality of life
MeSH terms
Decision Making, Family, Humans, Neoplasms, Quality of Life, Caregivers

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review